Community survey of Long Covid clinics for children (by Long Covid Kids)

https://www.longcovidkids.org/post/...minary-healthcare-experiences-survey-findings

Long Covid Kids is an informal group of parents and others supporting or caring for children sick with LC. This isn't a formal survey, but it seems to have been necessary since 3 years into widespread roll-out of LC clinics, on the model of "CFS" clinics", there hasn't been a single assessment of any such clinic or program.

As expected, the results are damning, essentially mirror the failure and horror of BPS clinics. The clinics are all in the UK.

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The survey was developed by Long Covid Kids and their patient representatives and aimed to increase the awareness of healthcare experiences of children and young people living with Long Covid. Thanks go also to the research team at Long Covid Support who created the adult version of this survey, from which this survey was adapted.

Three hundred and ninety-seven responses were collected over eight weeks from 27th November 2022 to 18th January 2023.


Key Findings:

• 59% of children and young people highlight that subsequent infections with COVID-19 have added further symptoms/complications to their Long Covid.
  
  
• Almost sixty per cent of children that completed the survey were treated by healthcare professionals which includes treatment at home, at least one visit to A&E and/or admission to a hospital.
  
  
• Over half of CYP who received support from healthcare settings were very dissatisfied or dissatisfied with the level of care they received.
  
  
• Predominant access to clinical investigations is routine assessments, with very few children or young people (<10%) being able to access more detailed tests. A further 5% of cases resulted in no tests/investigations being ordered.
  
  
• 72.8% highlighted their experience has not met their expectations with 51% of those using private healthcare or looking abroad for treatment options.
  
  
• 26% of children and young people are still awaiting a referral to an established Long Covid service.
  
  
• For those referrals that have been made the average waiting time for this to occur is more than six months for 66.4% of CYP.
  
  
• 42% of those that have been referred to a Long Covid service are either unsatisfied or very unsatisfied with their experience.

Sample overview:

• Mean survey response age was 13.3 ± 2.9 years (min: 4, median: 14 max:18).
  
  
• 72.9% of respondents (n=283) reported signs or symptoms post-infection with Sars- Cov-2 (COVID-19) for at least four or more weeks. The remaining 27.1% have not been formally diagnosed and are still waiting for a diagnosis.
  
  
• Positive COVID-19 Lateral Flow Test, PCR test and/or anti-body test was reported by 92.4% of respondents. The remaining 7.6% tested negative or were unable to get a test.
  
  
• First confirmed reports of infection date back to November 2019 and as recently as December 2022.
  
  
• 87% report that signs and symptoms of Long Covid were evident following their first infection.
  
  
• The impact of repeat/subsequent infections worsened symptoms of Long Covid for 58.9% of the sample (n=260). 41.1% (n=137, report no subsequent infection).
  
  
• Vaccination rates are 67.7% of the sample (n=224).
  
  
• 64.6% (n=159) reported no prior knowledge of physical impairments, health conditions or learning differences that impacted the ability to carry out day-to-day activities.

 

Failure, in a picture worth millions of words: